Friday, December 9, 2016

This post is behind schedule, but it's nice that I have more of an experience to write about now that it's been a few months since Elena started middle school.

I had a few meetings with her IEP transition team at the end of 5th grade; basically, I met with someone from special ed and her new case manager. We talked about where she was in 5th grade, and they gave some suggestions based on the largest differences between the environments--but they had never met Elena, and I had never toured the new school. The key theme was the difference in size (in the general sense); building, number of students in classes, distance between things, homework load, responsibility, etc. Basically I was being warned about the beast that was middle school--when previously I was worried more about E's self-esteem, making friends, self-advocating for herself, and trying to gain independence. They started brainstorming about all sorts of adaptations for school, without seeing if she would actually need them. Honestly, I was so overwhelmed with our discussion I decided I would just have to wing it as best I could, withe one exception: I was adamant that she have a full-time aide (Elena didn't have one in 5th grade, and she loved it; I figured she may think it was taking a step backward, but I could tell it was non-negotiable).

Here's the good part: overall, her experience is very positive. I organized a meeting prior to school with all her teachers to try to prime them about Elena, with the key undertone of working together to help her use her time wisely. I could feel the teachers rolling their eyes thinking "here's another mom freaking out about homework", but when I put her situation in different terms, they started to listen. I said "as a general rule, it takes Elena four times as long to do things as other people. To do ALL THINGS--get dressed, brush her teeth, eat, go down steps, get in a car, write, read, open a backpack--ALL THINGS". Time is a precious resource to us. This means that every minute wasted out of frustration, or being idle, or spent on a worthless adaptation affects her life in a huge way--because with Elena, there is no "hurrying up". In order to make this work, I needed homework given in advance in order for us to ensure it would be turned in on time; she has extra time for work prescribed in her IEP (but I expect her to be responsible for her work as close to on time as possible). I could tell that most of her team was listening with intent--which was pretty good, as she has a lot of teachers.

And speaking of time, the only way to carve out some extra time was for her to get a ride to school. The county refused my request for private transport; I'm still working on this, but for now I am happy to drive her. It takes 8 minutes instead of 30+ each way and I get to recap her day with her aide. This is only really an issue 2 out of 5 days of the week; E has appointments right after school 3 days a week (special exercise program for biking, psychology, PT). School starts late here, and they get out late (4pm); this means there isn't that much time to do something fun/have appointments, eat, and do homework before bedtime (~830 pm--E needs a lot of rest).

Her aide is very helpful. She helps her organize her homework (there is so much issued and turned in online, it's mind-boggling), and carries her backpack/lunch when she is tired or her posture is too poor to manage extra weight. Elena typically has an extreme crouch situation in the fall because of the demands of school (lots of sitting, etc.) and this year is no exception. Her crouch is pretty bad, but objectively I think I've seen worse. Her backpack is heavy (I'm working with the Assistive Technology team to try to help this) but her classes are close to each other, and she only needs it in the first three periods of the day, when her energy is good. She wants to carry her own things and be self-sufficient--but she speaks up when she needs help because she feels unsafe or she is tired. In general, her teachers know I want her space to be accessible but also within the working group (socialization is a key element I stress with her educators). Her aide is close by, but tries to stay "invisible" so Elena can fit in as best she can. She leaves her classes a little early so she can navigate the hallways before they fill with students. The hardest times to manage are lunch (the lunchroom is loud, lots of people, and lots of fall hazards and a short time to eat)(she has designated snacktimes so she has enough opportunity to eat) and gym (outside fields are FAR away, inside gym is packed, needs Adaptive P.E. or other help).

Aside from all that, I wanted Elena to find something to enjoy, with peers, and make friends. I let her team know that I would make this a priority and try to help manage everything else. Because school gets out late, a lot of activities take place before the starting bell. Elena joined the art club, which she likes, and auditioned for a special choral group. Honor Choir meets twice a week before school; she loves it.

Managing the kids at school and ensuring downtime is very time consuming for me. Much more than I expected...it's a full-time job. It's much more difficult than elementary school. Time crunches/conflicts frequently end up in full-blown meltdowns, bringing the home to a standstill (hence our return to the psychologist--which is going very well, not to mention I think it would be a good thing for Elena to have a relationship with one through middle school). Rest is incredibly important, and we stress reasonable bedtimes and downtime. But it's a lot to fit in.

As for adaptations, that's still a work in progress. I have a few in mind that we haven't really tried yet; we'll have some experience with these by the end of the year, and I'll report about that. I'm not particularly tech savvy, but I hope Elena becomes so.

And the best news? Elena is getting great grades, she's very responsible with her schoolwork (if only that could spill over to things at home!), and overall she seems happy. Her favorite subjects are Chorus and her Advanced Language Arts class. She is doing well and we are so very proud of her.

3 comments:

HI AMY. IT SOUNDS LIKE ELENA IS DOING WELL IN 6TH GRADE. I NOTICE THAT HER RIGHT KNEE IS REALLY BENDING. HOW IS HER KNEE DOING?. I ASK BECAUSE I AM HAVING A SIMILAR PROBLEM WIYH MY KNEE, BECAUSE IT BENDS TOO MUCH THERE IS TOO MUCH PRESSURE GOING THROUGH THE JOINT AND IT GETS REALLY SORE AND DOES 'T STRIAGHTEN WHEN I WALK BECAUSE OF THE INCREASED HAMSTRING TIGHTNESS. I AM SEEING AN ORTHOPAEDIC SURGEON IN JANUARY, DO YOU HAVE ANY THOUGHT AND ADVICE I WOULD APPRECIATE IT.

Knee issues of my own and my crouch is ugly. In PT and hope to get orthotist intervention to help it. Hoping to try Allard's Combo which makes my BlueRockers into KAFO. And glad to see her doing reasonably well. And you folks doing all to see her functioning at her best.

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.